By Clare Almand
10 Jun

When the Solution Is the Problem

Monday, June 10, 2013

Last year, I received a letter from the company that manufactures my ICD informing me that there’s a 1 in 9,000 chance that I have a defective device. Not enough of a problem that it demanded a recall, but just something that I should be aware of. The “defect” that my device might have would result in the battery depleting to 0 suddenly.

For someone who needs the device for the defibrillator only, it may not be an immediate crisis. But for someone like myself, who needs the device to pace my heart constantly and has needed this for more than 15 years, a defect of this magnitude would cause me a lot of trouble.

So what to do? Since my heart condition is almost always on the back burner, I read the letter and went on with my life. But upon visiting my cardiologist, we got into a discussion about what would be best for me considering my independent lifestyle in New York. And the weirdest thing resulted from this discussion: I was given a CHOICE. I have never been given a choice on whether or not I wanted surgery. It was always a “you need this or you’ll die” situation, which makes the decision a lot easier.

I have written before about wondering what it would be like if my battery did suddenly die—would I be able to walk around and get to a hospital by cab, instead of calling an ambulance? My cardiologist believed with my particular heart condition, I might become unconscious immediately and if I were in the subway or on the street somewhere, it could become very dangerous for me.

That was a bit of a wake-up call, pulling me out of “my-heart-condition-isn’t-really-a-big-deal” fantasy that I so often slip into. So I chose surgery. Because who wants to suddenly collapse on a New York City subway platform? They’re so dirty.

I spent a couple weeks getting up the courage to tell a few people I work with about the situation. I had scheduled the procedure (technically, it’s not “surgery,” but if I get cut open and someone puts a metal battery in my chest and connects it to my heart, I’m calling it surgery) for a month in the future. And I finally got myself a proper medical alert bracelet.

Once everyone in my life who needed to know what was going on was informed, I got some surprising but great news: The procedure might be more trouble than it’s worth. My surgeon informed me that the newer ICD models (mine is three years old) have only slightly better odds of not being defective. Also, the first year with the device can be the most problematic, so having already passed that first year, it would increase my chances of having a problem to have a new device put in.

I’m very fortunate, once again, to have averted a potential medical disaster (because almost all of my experiences in the hospital are disasters—I’m really quite difficult). I’m grateful to my cardiologist, surgeon, and all other cardiology personnel who keep me on track and make sure I never forget what it means to have complex congenital heart disease.

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